In September 2024, ASHG advocates attended the 12th annual Rally for Medical Research in Washington, DC, joining the broader biomedical research advocacy community in advocating for medical research awareness and funding. Each September, the Rally for Medical Research brings together doctors, researchers, advocates, and survivors from across the nation to meet with their congressional offices on Capitol Hill and call for the prioritization of funding for the National Institutes of Health (NIH). Since the Rally’s inception, NIH funding has increased by over $17 billion, or 58%, due to the work of steadfast advocates. This year, medical research advocates rallied together to recommend a funding level of at least $51 billion for Fiscal Year (FY) 2024, with upwards of 250 advocates surpassing 200 meetings with congressional offices from more than 30 states.
ASHG, in partnership with over 350 other organizations, has been a proud sponsor of the Rally for several years. This year, the Society was able to provide funding for the 2024 Advocacy Certificate for Human Genetics and Genomics Trainee (ACGT) participants to fly out to Washington, DC to meet with their congressional offices and put into practice the advocacy skills that they have been learning throughout their ACGT training. Trainees engaged in discussions with their fellow participants, heard from inspiring speakers including patient advocates, NIH Director Monica Bertagnolli, MD, and Senator Richard Durbin (D-IL), and met with congressional staffers and representatives from California, Maryland, Ohio, and New York. Miriam Saffern, a PhD student at the Icahn School of Medicine at Mount Sinai, noted that it was one of the highlights of her career so far.
Saffern said, “My favorite part was listening to the inspiring words of a pediatric glioma survivor which brought tears to my eyes and reminded me: this is why I do what I do. To me, sharing my story with policymakers is a responsibility, but also a privilege, and it was awe-inspiring to see how receptive, excited, and appreciative they were. I definitely want to go back!”
Larah Siouffey, another ACGT trainee, was similarly affected by the experience, noting that though she was initially nervous about meeting with representatives and staff, she quickly began to feel comfortable once the conversations started. She noted that the staffers were genuinely interested in her research and receptive to her advocacy efforts, and said that “being in the historic buildings where so many important decisions are made was incredibly inspiring. This experience has motivated me to stay engaged, and I hope to continue building a relationship with my local representative’s office.”
The Rally for Medical Research is a rare experience: not only does it allow scientists, students, and advocates to visit Capitol Hill and meet lawmakers and their teams, but it also allows congressional offices to learn more about the research happening in their district and state, to meet the scientists and patients who live there, and to hear about how NIH funding directly impacts so many people in their home district.
NIH funding levels for the current fiscal year (FY 2025) are not yet finalized; the agency is operating under a temporary funding measure, a continuing resolution (CR), which is set to expire on December 20. In a November letter to the leadership of the House and Senate appropriations committees, nearly 400 members of the Ad Hoc Group for Medical Research coalition, including ASHG, called on appropriators to finalize the FY 2025 NIH funding bill by the end of the year, with a strong investment in the NIH. ASHG looks forward to continuing to engage with policymakers, participate in the Rally for Medical Research, and advocate for increased NIH funding to support scientists, patients, and lifesaving treatments that come from human genetics and genomics advances throughout the coming years.